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Xeljanz (Tofacitinib Citrate): My experience on the trial
I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.
I thought it would be nice for everyone if I documented my progress on here.
Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.
The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results.
I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.
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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by Frrankie on
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Sorry I was not clear. Total of 4 pills a day. Two in morning and two at night. I have been at that level for a out two weeks. I have been on Xeljanz for about 5 months. I think it will take years at this rate but I got the legs.
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Frrankie, hello.
I don't what you supplement xeljanz with but I strongly reccommend kenalog injections. I was in a similar position, my nails got better, grew some hairs here and there, and even noticed some vellus, but nothing to really speak of.. This carried on for almost 9 months, until I introduced the injections. Initially, I had been hesistant, since in the past whenever I got injections the hair would just fall out after 2 weeks. But I figured since I'm using Xeljanz, perhaps it will hold--and it has. My first roud of injections my derm oly focused on the back of my head, in about a month, plenty of hair grew. When I went back, we did the whole scalp and eyebrows, again the hair grew. This is my advice for any slow responders. It may not work for all, but it's worth a shot. Good luck.
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Permalink Reply by Rascalx2 on
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Im gonna give shots a try, I m going to derm friday to talk about it. I thought it would just fall out after few weeks.., it has stayed for you? Thats posistive ! I have a white beard and lot of white hair on sides of head, left eye has full eyelashes, right eye has lashes but not full, the hair , and the peach fuzz is nice to have on my face, I dont feel so stark and smooth . The little bit adds some definition and some sun helps to add some color. I pray to be healed and am trying to accept whatever that is.
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My son is responding well to Xeljanj and his derm just injected him in the three only areas that he is still bald: back of head and front/sides. The Dr said those are the last areas to grow in.
Will update as we get results.
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Anyone here patient of Dr King know when approximtely will xeljanz be FDA approved?
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take it off label.
we are only phase 2. we're not close...
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Wow not the best of news:( what's after phase 2?
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Phase 3 and then phase 4 and then a waiting period. Someone said on here it may be 2025 for completion (if it clears)
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Hi, I have just started my xeljanz journey yesterday. So 5mgs in morning and 5mgs at night..... Fingers crossed I'm a responder (the quicker the better too!). I'll keep you guys posted on progress. Any side effects you guys have experienced and any info on response times and processes ( I have looked through the thread but probably missed heaps as it is 444 pages!!!!). Any info for a newbie much appreciated.....
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Hello, on 4 a day split morning and night now for about 3 weeks. No side effects. Knock on wood! Responding but slowly. Finger nails are getting stronger. Good luck don't get discouraged. It may be a slow walk.
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Hi Theresa,
I don't think my son had any changes at all in 4 weeks' time. At 2-3 months (late April) he had about 1 inch of hair in splotchy areas on about 50% of his head.
Thank you for keeping us posted.
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